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Open Access Study protocol

The everyday experience of living with and managing a neurological condition (the LINC study): study design

Joan Versnel1*, Tanya Packer1, Lori E Weeks2, Jocelyn Brown1, Marshall Godwin3, Susan Hutchinson4, George Kephart5, Diane MacKenzie1, Kerstin Roger6, Robin Stadnyk1, Michelle Villeneuve7 and Grace Warner1

Author affiliations

1 School of Occupational Therapy, Dalhousie University, 5869 University Avenue, 215 Forrest Building, PO Box 15000, Halifax, NS B3H 4R2, Canada

2 Department of Applied Human Sciences, University of Prince Edward Island, 550 University Avenue, Charlottetown, PE C1A 4P3, Canada

3 Discipline of Family Medicine, Faculty of Medicine, Memorial University of Newfoundland, 2420 Health Sciences Centre, St. John’s, NL, A1B 3V6, Canada

4 Schoolof Health and Human Performance, Stairs House, 6230 South Street, Dalhousie University, PO Box 15000, Halifax, NS B3H 4R2, Canada

5 Department of Community Health and Epidemiology, Faculty of Medicine, Dalhousie University, Centre for Clinical Research, 5790 University Avenue, Halifax, NS B3H 1V7, Canada

6 Department of Family Social Sciences, University of Manitoba, 204 Human Ecology Building, Winnipeg, MB, R3T 2N2, Canada

7 School of Rehabilitation Therapy, Queen’s University, Louise D. Acton Building,31 George Street, Kingston, Ontario, K7L 3N6, Canada

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Citation and License

BMC Neurology 2013, 13:30  doi:10.1186/1471-2377-13-30

Published: 21 March 2013

Abstract

Background

The impact of neurological conditions on individuals, families and society is increasing and having a significant economic impact in Canada. While some economic data is known, the human costs of living with a neurological condition are poorly understood and rarely factored into future burden analyses. The “Living with the Impact of a Neurological Condition (LINC)” study aims to fill this gap. It seeks to understand, for children and adults with neurological conditions, the supports and resources that make everyday life possible and meaningful.

Methods/design

The LINC study is a nested study using mixed methods. We are interested in the following outcomes specifically: health status; resource utilization; self-management strategies; and participation. Three studies captured data from multiple sources, in multiple ways and from multiple perspectives. Study One: a population-based survey of adults (n = 1500), aged 17 and over and parents (n = 200) of children aged 5 to 16 with a neurological condition. Study Two: a prospective cohort study of 140 adults and parents carried out using monthly telephone calls for 10 months; and Study Three: a multiple perspective case study (MPCS) of 12 adults and 6 parents of children with a neurological condition. For those individuals who participate in the MPCS, we will have data from all three studies giving us rich, in depth insights into their daily lives and how they cope with barriers to living in meaningful ways.

Discussion

The LINC study will collect, for the first time in Canada, data that reflects the impact of living with a neurological condition from the perspectives of the individuals themselves. A variety of tools will be used in a combination, which is unique and innovative. This study will highlight the commonalities of burden that Canadians living with neurological conditions experience as well as their strategies for managing everyday life.

Keywords:
Participation framework; Self-management; Chronic disease; Services; Children; Youth adults; Parents; Disability